Emergency planning guide for persons with developmental disabilities

Revised October 2005
? 2004, Arizona Department of Economic Security
Table of Contents
Introduction ..................................................................................................... 1
Section I -Support Systems Guardianship ............................................................................................................. 3 Special Needs Trust .................................................................................................. 3 Emergency Contact ................................................................................................... 3 Developing Support Sytems ..................................................................................... 4 Postal Carrier.............................................................................................................. 4 Utility Company ........................................................................................................ 4 Emergency Personnel Contact .................................................................................. 4 Employer ................................................................................................................... 5 Day Program or Training Program .............................................................................. 6 Educational Facility ................................................................................................... 6 Therapeutic Services ................................................................................................. 7 Air Evacuation Personnel ......................................................................................... 7 Vial of Life ................................................................................................................. 7 Medications ............................................................................................................. 8 Allergies .................................................................................................................... 8 Medical Conditions ................................................................................................. 8 Prostheses, Medical Apparatuses and Supplies .................................................... 8 Travel Kit .................................................................................................................... 9 Advanced Directives ............................................................................................... 9 Pets and Domestic Animals ..................................................................................... 9 Water and Heating ................................................................................................... 9 Residential and Out-of-Home Placement ............................................................... 1 0 Individuals Living on Their Own .............................................................................. 1 1 Section II - Daily Schedule ............................................................................. 1 2 Section III - Emergency Information Checklist and Cards.............................. Emergency Information Checklist Completion Guide ........................................... Emergency Information Checklist ............................................................................ Wallet Card for Individual with a Developmental Disability ................................... Wallet Card for Caregivers ........................................................................................ 20 21 23 25 26
Introduction
he Arizona Governor's Council on Developmental Disabilities (GCDD) sponsored the development of the Emergency Planning Guide for Persons with Developmental Disabilities to help facilitate the transition of care for the individual with developmental disabilities, if an emergency occurs for that individual or the care provider.
T
Information used in the design and publication of this guide was obtained from individuals with developmental disabilities, family members and service providers throughout Arizona who participated in ten focus groups. Participants ranged in age, and their developmentally disabled family members ranged in age and severity of disability. A draft guide was distributed to participants in the original focus groups, and to other non-participants who had expressed an interest. The Emergency Planning Guide for Persons with Developmental Disabilities is a step-by-step guide designed to aid caregivers in preparing an individualized plan to ensure the appropriate personal and daily care of their family member, in the event the caregiver is incapacitated. This guide is intended primarily for parents, siblings and other loved ones who are responsible for the care and fiduciary oversight of a family member with developmental disabilities. The term "caregiver" is used throughout the guide for ease in reading, and is not to be confused with fee-for-service caregivers who are paid to provide daily care for individuals with developmental disabilities. Planning for the care and fiduciary oversight of a loved one with developmental disabilities is the most precious gift a family can bestow on all family members. The establishment of a comprehensive emergency plan should be completed regardless of the age of the individual or severity of the developmental disability. There may be some sections of the guide that do not apply to your situation or family member. This guide was developed for all levels and severity of developmental disabilities.
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_______________________________________________________________________________ Introduction
The Emergency Planning Guide is divided into three sections:
Section I ? Support Systems assists caregivers with identifying community
supports, who would contact emergency personnel in the event of any sudden changes in routine or schedule for the caregiver or individual with developmental disabilities. Storing of medications and medical equipment in a specific location, fiduciary plans and other preparations are also covered.
Section II ? Daily Schedule is a guide to document the daily routine, habits and
activities of the individual with developmental disabilities. This will facilitate the continuation of activities and routines with the least amount of disruption, in the event someone else must suddenly assume caregiver responsibilities.
Section III ? Emergency Information Checklist and Cards gives information
on preparing the Emergency Information Checklist, the wallet-sized Emergency Information card for caregivers, and the Emergency Information card to be carried by the individual with developmental disabilities. All information should be current and any changes in information contained in the plan should be completed as needed. At a minimum, the Emergency Plan should be reviewed and updated yearly.
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Section I. Support Systems
Guardianship
The establishment of guardianship and the protection of assets will benefit not only the developmentally disabled family member but also all family members. Establishing guardianship will ensure that the primary caregiver family members are able to make decisions that significantly impact the health, safety and welfare of the developmentally disabled family member. For many families, the decision to establish guardianship is difficult. It is critical to obtain accurate information that relates exclusively to Arizona's statutory regulations and mandates. The Governor's Council on Developmental Disabilities publishes the Legal Options Manual for Families, Consumers and Caregivers When an Individual with Developmental Disabilities Reaches the Age of 18, developed for the Governor's Council on Developmental Disabilities by the Arizona Center for Disability Law. It contains accurate, detailed information on Guardianship, Conservatorship, Durable General Power of Attorney and related topics.
Special Needs Trust
Establishing a special needs trust will ensure the protection of assets and financial oversight for the developmentally disabled family member upon the death or incapacitation of the primary caregiver family member(s). A trust will protect any assets that the family member may inherit, without negatively impacting any entitlements like Supplemental Security Income (SSI). The developmentally disabled family member will also be protected from any possible legal actions from a third party that could negatively impact his or her financial stability and be contrary to the final wishes of his or her parent(s).
Emergency Contact
Emergency contact information should be accurate. Anyone listed should be informed that he or she is an emergency contact and agree to perform the tasks requested. All people listed as emergency contacts should know who else is listed and how to contact them. If respite care is a service that is available to the family, include the respite care worker on the emergency contact list. Contact those individual(s) who can be relied upon in the event of an emergency and discuss their role. Inform them of the Emergency Plan. Once they have agreed, provide instructions and/or demonstrate the tasks to be performed. Some roles and
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responsibilities can be divided among several people. Show them where items they will need are stored, such as legal documents, household members' identification, banking information, keys, passwords and security codes.
Developing Support Systems
The development of a support network of neighbors, family, friends and/or co-workers is critical. This network should be people with whom the caregiver maintains regular communication. These individuals should have one another's telephone numbers and home and work addresses, so they can be in contact in the event there has not been any communication, or they notice that something appears to be amiss. If this occurs, they will attempt to contact the caregiver and, if no response, contact the appropriate emergency responders.
Postal Carrier
Inform the postal carrier that an individual with developmental disabilities resides at the residence, and request that the carrier contact law enforcement if he or she notices the mail and/or newspapers piling up or any other changes in the household patterns. In some communities and neighborhoods the postal carrier may regularly change. If this option is not be feasible, consider posting the information inside the mailbox.
Utility Company
Utility company personnel assigned to specific service areas are very familiar with the neighborhoods. They are in neighborhoods all hours of the day and often times are able to see in backyards. Contact the utility company's customer service department to inform the company that an individual with developmental disabilities resides at the residence, and request that the company representative contact law enforcement if he or she notices the mail and/or newspapers piling up or any other changes in the household patterns.
Emergency Personnel Contact
Visit the fire station nearest to the home to meet with personnel from each shift. Inform the firefighters and emergency medical technicians (EMTs) that an individual with developmental disabilities resides at the specific address or location. Inform them of the Emergency Information Checklist and provide information to aid in their response.
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In urban areas, fire department responses do not always occur from the nearest station to the location of the emergency. If the nearby station personnel are responding to another emergency, the emergency response personnel from another station will respond. This should not discourage the family from visiting the fire station closest to their home. In rural areas many fire departments are managed by volunteers, or a combination of paid personnel and volunteers. Request an opportunity to attend one of the volunteer fire department's regular meetings, to inform them that an individual with developmental disabilities resides at the home. Provide information that may assist in their response. Accurate, written directions are necessary for residences that are difficult to locate (for example, roads are not maintained, or there is no signage and/or house numbering system). Inform the personnel of the Emergency Information Checklist posted on the refrigerator. Contact the local law enforcement department to inform the officers that an individual with developmental disabilities resides at the residence. Inform the officers of the Emergency Information Checklist and provide information that may aid in their response. Request a visit by the officers assigned to the precinct or "beat" in your neighborhood. Introduce the individual with developmental disabilities and provide additional information that may assist with the officers' response to emergency calls. Request that the officers check on the occupants, in the event that they notice anything different with the house such as the mail and/or newspapers piling up, doors left wide open, window coverings remaining open or closed. In rural areas it may be necessary to provide accurate, written directions to the residence when there is no street signage and/or house numbering system, or where the residence is in a remote or isolated area.
Employer
A caregiver should develop a plan with his or her employer in the event that he or she does not arrive as scheduled to work, and there have been no previous work schedule changes. A similar plan should be developed with the developmentally disabled family member's employer in the event that the family member does not show up for his or her scheduled shift, and the employer has not received a call regarding the absence. The employer plan should include, at a minimum, the following steps:
! Employer to call the family member's home. ! If no answer, employer to call the emergency contact. Emergency Planning Guide 5
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! If no answer at the emergency contact, employer to call law enforcement and ask
them to check on the household. If the family does not have a telephone and the emergency contact person does not live in close proximity, the family may want to consider requesting that the employer contact law enforcement only to ask that officers check on the household.
Day Program or Training Program
Inform the program supervisor and primary staff contact of the developed Emergency Plan. Request that the family member's file include an emergency plan in the event the family member has not made any schedule changes and
! Does not arrive as scheduled; or ! The agency driver (if transportation is provided) reports that no one answers the
door at the scheduled pick-up or drop-off time. This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone number(s).
! If no one answers at the alternate telephone numbers and/or emergency telephone
numbers, staff to call law enforcement, informing the duty officer about the situation and request that officers check on the household. It is critical that all information in the family member's records is current and accurate. Detailed directions to the home must be included if the residence is located in an area with no street signage and/or no house numbers, or in a remote area.
Educational Facility
School personnel, including preschools, should be informed of the establishment of the Emergency Plan and the school's role in the implementation. Medical care release forms should be updated and include the individuals listed as emergency contacts. This will avoid any delays in the event medical care is required and the caregiver is incapacitated. The family member's school records should include an emergency plan in the event the family member has not made any schedule changes and:
! Does not arrive as scheduled; or ! The van/bus driver (if the school or school district provides transportation) reports
that no one answers the door at the scheduled pick-up time or drop-off time.
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This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone number(s).
Therapeutic Services
Caregivers should document a plan with any therapeutic service provider (e.g., speech therapist, occupational therapist, physical therapist, psychiatric services) who is regularly scheduled to provide services in the event the developmentally disabled family member or the caregiver does not arrive for the scheduled appointment or does not answer the door, if it is an in-home service. This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone numbers.
Air Evacuation Personnel
Families residing in rural areas depend upon air evacuation for medical emergency transportation. Meet with personnel from each shift, including any "on-call" personnel, to provide information that will assist with their response. Contact the Air Evacuation business office to inquire about the availability of pre-flight planning for medical emergency transportation. Relevant information about the individual with developmental disabilities should be provided and made readily available in the event of any air evacuations.
Vial of Life
The Vial of Life provides medical information to emergency personnel and is an abbreviated back-up to the Emergency Information Checklist. List the names of all household members. Identify the individual with developmental disabilities, medication schedule with any special administration instructions, medical problems, physician contact, location(s) where medications are stored, case manager and emergency contact information. Date the information (it is important that emergency personnel know they're getting the most current information), and insert into an empty pill container. The Vial of Life information should be reviewed periodically, and updated whenever there are any changes. Document the date revisions were made.
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The Vial of Life is secured with tape to the underside of the top shelf of the refrigerator. Emergency personnel are trained to look for a Vial of Life in this universal location. Another vial should be stored in the glove compartment of the caregiver's vehicle(s).
Medications
A specific location to store all prescribed medications and those over-the-counter medications that are administered on a daily basis (i.e., vitamins) should be identified. Each family member's medications should be placed in a separate container, in a specific area and labeled with the individual's name. Medications requiring refrigeration should be placed in a labeled container or specific shelf within the refrigerator. Information on the purpose of the medication should also be included (i.e., seizures, high blood pressure, etc.). A copy of the family member's health insurance card, and a listing of the medication schedule with any special administration instructions should be stored with the medications, and included in the Vial of Life (see Vial of Life section above). All discontinued medications should be immediately discarded or removed from the identified designated location for medications, and deleted from the Emergency Information Checklist and Vial of Life information.
Allergies
List all known allergies, allergic reactions and required medical interventions, if applicable.
Medical Conditions
Identify all medical conditions including visual, auditory, dietary restrictions, communicable diseases, seizure disorders, asthma, high blood pressure, heart conditions, diabetes and use of feeding tube, respirator, oxygen, etc.
Prostheses, Medical Apparatuses and Supplies
Identify locations to store any prosthesis, medical apparatuses and supplies when not in use. Develop a list of the items, such as eyeglasses, hearing aids, false teeth, wheelchair, walker, crutches, feeding tube, communication board and diapers/disposable underwear. Store the list in the container with the medications. Document the name, telephone number and address of the medical equipment suppliers. Consider the use of medical alert systems. With these systems, the individual wears or carries an identifier (e.g., bracelet) to inform emergency responders that he or she has
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a specific health or medical condition, and often there is a toll-free number to contact for additional information.
Travel Kit
If medical related supplies and items are needed, organize a "travel kit." The travel kit will contain a two (2) day supply of the necessary items, such as feeding tube, lubricant, disposable underwear/diapers, wipes, antiseptic swabs, latex gloves, aspirator, etc. Identify a specific location to store the travel kit and include a list of the contents. Also include the physician's name and contact information.
Advanced Directives
Post the original, signed Advanced Directive or Do Not Resuscitate Order with the Emergency Information Checklist. Update the Order every two years, at a minimum. The Governor's Council on Developmental Disabilities publishes the Legal Options Manual for Families, Consumers and Caregivers When an Individual with Developmental Disabilities Reaches the Age of 18. This manual provides detailed information on Advanced Directives and the Durable Health Care Power of Attorney, with forms and instructions for completing them.
Pets and Domestic Animals
The care of pets and domestic animals should be arranged in the event of an emergency. Identify others who agree to temporarily care for family pets and domestic animals. Pet foster care is available in some areas, primarily urban. Contact these organizations as an option for the care of household pets. The location of supplies and storage of animal food/feed and care routines should be reviewed with whomever has agreed to provide the care. If an account is established for feed, apprise the feed store of the Emergency Plan and arrange the charging of feed expenses in the event the animals must be in the temporary care of someone else.
Water and Heating
In some areas, particularly rural and unincorporated areas, there is no established water service. If there is no water service for the residence, information should be documented and posted with the Emergency Information Checklist on how water is supplied to the residence. If water is delivered, include the contact name and telephone number of the water delivery service, water delivery schedule and method of payment.
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If the only means of heating and/or cooking is wood fuel and/or propane, any delivery schedules and method of payment should be documented and posted with the Emergency Information Checklist. Individuals on the emergency contact list should be informed of any water delivery, propane and/or wood fuel needs.
Residential and Out-of-Home Placement
The Arizona Department of Health Services and the Arizona Department of Economic Security require residential programs to develop and implement emergency procedures. While these procedures are comprehensive, they do not address emergencies that occur at the developmentally disabled family members' residence. Family members should ensure that residential program staff has:
! Current contact information including employers, cellular and facsimile telephone
numbers and e-mail addresses
! Current emergency contacts and the order in which to contact ! Family members' work schedules ! Schedule of work-related business trips and how to contact when out of town ! Vacation schedule and contact information ! Any Advanced Directive or Do Not Resuscitate (DNR) orders, if applicable.
Emergency plans need to be in place for those times when the developmentally disabled family member is home for visits and holidays. The same information should be developed as for those who reside at home. The Emergency Information Checklist should be posted on the refrigerator and the wallet-sized Emergency Information card carried at all times. Families with regularly established visitation and telephone contact patterns should inform the residential program staff of the Emergency Plan and include the residential program staff as part of the support network. The plan should include instructions for staff:
! To contact the family if they have missed a scheduled visit or meeting or there is a
lapse in communication without previous contact by the family to inform staff of any changes
! If no one answers at the home or work, to call alternate telephone numbers and/or
emergency telephone number(s), and
! If no answers at the alternate telephone numbers and/or emergency telephone
numbers, to call law enforcement, informing officers of the situation and requesting that they check on the household.
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Individuals Living on Their Own
The establishment of an Emergency Plan for developmentally disabled individuals living on their own is critical for their well-being. Inform the fire station nearest to the home and the local law enforcement agency that an individual with developmental disabilities resides alone in the home, and provide information that will assist officers in responding to an emergency. Specific directions to the residence must be provided if the family member is residing in a location where there is no signage and/or house numbering system. A color-coded speed dialing system can expedite emergency responders. All household telephones should have the same color-coded system. If the individual has a cellular telephone, the cellular telephone should be programmed to expedite an emergency response. In some areas, especially rural areas, cellular telephone transmission may be intermittent or of poor quality. It should also be remembered that the technology for cellular telephones might not be available to determine the location of the emergency, without verbally informing the emergency response system of the location of the emergency. The Emergency Information Checklist described in this guide should be completed and posted on the refrigerator (see page 20). Medications, medical apparatuses, supplies and prostheses should be stored in a specific location and documented on the Emergency Information Checklist. Family members' vacation and business trip itineraries should be posted on the refrigerator. The apartment manager should have a list of emergency contacts and the order in which they should be called. These include work numbers, pagers, cellular telephone numbers and place of employment for all family members. Family members should inform the apartment manager of any vacation and business trip itineraries. Employers and day programs should be included in the Emergency Plan (see pages 5 and 6).
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Section II. Daily Schedule
A
change in routine can have serious consequences for a developmentally disabled individual. In the event of an emergency, it is important to try to maintain as much of a routine as possible.
This section is a guide to use in documenting and/or audio recording the family member's daily activities. If weekend activities and routines are different, document or record the weekend routine. For individuals who live on their own or who do not have a set daily routine, document that they do not have a set routine, and the activities that they perform during a regular day. When completed, the documentation and/or audio recording should be stored in the container with the medications. If stored in another location, document on the Emergency Information Checklist where the information is located. Distribute copies to the people listed as emergency contacts, and have a copy filed in the case manager's records.
Morning Activities
Wake-up time ? Does family member wake-up on his or her own? What time does he or she wake up?
Breakfast ? What does family member prefer to eat and drink? Where does he or she sit? Any assistance needed? Foods to avoid?
Television on or off?
Radio or music on or off?
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Housekeeping - Does family member set table? Remove dirty dishes from table? Wash dishes/load dishwasher?
Does the family member make his or her own bed?
Assists with other housekeeping or yard work? Does family member have chores or assigned tasks (i.e., helps with laundry, empties trash, recycles)? Is there a reward system?
Hygiene - Does family member need assistance with personal care and dressing? Does family member shower/bathe in the morning or evening?
How often does the family member get a haircut and where?
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Daytime Activities
Does the family member prepare his or her own lunch to take to school, work or day program? If prepares own lunch, is it prepared in the morning or the previous night? If takes own lunch, what does he or she like to eat and drink?
School or training program - Does family member attend school or training program? Schedule? Transportation provided by whom? Pick-up/drop-off times? Lunch provided? Name of school, address, classroom number and teachers' names.
Day program - Does the family member participate in a day program? Participation schedule? Transportation provided by whom? Pick-up time/drop-off times? Lunch provided? Name of program, address, staff names.
Employment - Is the family member employed? Place of employment, supervisor's name, work schedule, pay day? Wear uniform and/or name tag? Transportation provided by whom? Pick-up/drop-off times? Takes lunch or buys lunch?
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If no planned activities or program, what time does he or she eat lunch? Food and beverage preference?
Appointments/Services
Document all regularly scheduled appointments (i.e., speech therapy, occupational therapy, attendant care and/or housekeeping) with the times, days of the week, location, staff names and duration of the appointment/service.
Recreation/Socialization
Participates in planned activities? Schedule? Costs? Transportation provided by whom? Pick-up/drop-off times? Types of activities he or she enjoys and any limitations?
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What television shows and videos does the famiy member enjoy? Plays video games? Board games? Plays cards and if so what games? Enjoys arts and crafts? To what degree does the individual know how to self-manage money?
Are there any concerns or areas needing extra supervision, such as use of telephone? Use of computer and chat rooms? Wandering?
Evening Schedule
Dinner time - Is evening meal at a specified time? Meal and beverage preferences? Does family member assist with meal preparation? Does family say grace before meal?
After dinner activities ? Watches television? Completes puzzles, draws or colors? Listens to music, plays an instrument? Performs chores? Takes a walk or rides bicycle?
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Bedtime activities ? Bathing and personal care? Plans clothes for following day? Does the family member say evening prayers?
Bed time ? Use of nightlight, door open or closed, music? Does he or she sleep through the night? Have nightmares? Wet or soil the bed? Wander the house at night? Leave the house? Sleepwalk?
Weekend Activities and Schedule
Does family member attend religious services? If so, what is the name and location of congregation? What time to attend? Where does he or she prefer to sit?
Holiday Routines and Special Days
Does family celebrate favorite holiday(s) and/or special days such as birthday, Super Bowl, Halloween, Valentine's Day?
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Assists with preparations? Where and with whom does the family celebrate the specific special events?
Special foods?
Does the family member attend religious holiday services? If so, what is the name and location of congregation? When is service? Where does he or she prefer to sit?
Activities that always occur on holidays or special days, such as family football game, baking/cooking, dyeing Easter eggs, lighting the Sabbath candles, etc.?
Behaviors/Speech Patterns
If the developmentally disabled family member is nonverbal, identify behaviors that will assist someone with understanding and communicating with the individual. Document if the individual uses a communication aid device.
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Notes
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Section III. Emergency Information Checklist and Cards
Emergency Information Checklist
To avoid delays in obtaining emergency services, the Emergency Information Checklist should be updated whenever any changes occur. You may make photocopies of the Emergency Information Checklist for updating, or download from the Governor's Council on Developmental Disabilities (GCDD) website listed below. To complete the Emergency Information Checklist, fill in the on-screen fields (requires Acrobat Reader 5.0 or later) and print the pages, or print the page and fill in the information with a permanent ink pen. Use the step-by-step Emergency Information Completion Guide on pages 21 and 22. Take your time when completing the Emergency Information Checklist and write legibly. Others have to read it. When completed, the Emergency Information Checklist should be posted on the refrigerator in the family member's residence. A copy may also be kept in the caregiver's car, and in the individual's case management records. The Checklist may be laminated for durability.
Emergency Information Cards
There are two (2) types of wallet-sized Emergency Information cards. The card on page 25 provides information about the developmentally disabled individual and emergency contact information. This card is to be carried with any other type of identifying information card. Some programs distribute identification cards for developmentally disabled individuals. Often, these cards include a photograph of the individual and the name of the program that provides services. The wallet-sized card should also be distributed to persons listed as emergency contacts. In the event of an emergency, they will have critical information readily available. The other Emergency Information card on page 26 is designed for caregiver use. It alerts emergency responders and others that there is an individual with developmental disabilities in need of a caregiver, if the primary caregiver is incapacitated. To complete the Emergency Information cards, fill in the on-screen fields and print the page (requires Acrobat Reader 5.0 or later). You can also print the cards and fill in the information later with a permanent ink pen. Additional Emergency Information Checklists and wallet size Emergency Information cards can be obtained at the GCDD website, www.azgcdd.org. You may also call the Council at 602-277-4986 (in the Phoenix metro area), toll-free 1-866-771-9378, or TTY 602-277-4949.
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Emergency Information Checklist Completion Guide
The completed Emergency Information Checklist should be posted on the refrigerator door for emergency personnel, and a copy may be stored in a caregiver's vehicle and filed in the individual's case management records.
! Date Completed
Document the date the Emergency Information Checklist was completed. A current Checklist will reduce delays, and the emergency responders will be assured the information is accurate. Document the address and/or specific directions to the place of residence and residence telephone number.
! Residence
! Household Members
Document the number of people living in the household and list the names of all household members.
! Employer(s)
Document the names of employed household members, employers' names and telephone numbers.
! Emergency Contacts
List names, relationships, telephone numbers and addresses of emergency contacts. List them in the order to be contacted. If applicable, include any respite care, attendant care and housekeeping providers.
! Medications and Blood Type
Identify the locations where medications are stored, and the blood types of household members.
! Medical Conditions (including allergies)
Document all medical conditions, such as disability information (diagnosis and/or explanation), communicable diseases, seizure disorders, diabetes, asthma, high blood pressure, heart conditions, and use of feeding tube, oxygen, respirator, etc. Identify conditions or events that may precipitate a seizure or respiratory problems. List all allergies, allergic reactions and required medical interventions.
! Prostheses, medical apparatuses and supplies
Identify the use of prostheses and/or needed medical apparatuses and the locations where stored. This may include eyeglasses, hearing aids, false teeth, wheelchair, w a l k e r , respirator, feeding tube, communication board, diapers/disposable underwear, etc. Identify the location of a "travel kit" containing necessary supplies (see page 9). Document the name, telephone number and address of medical equipment suppliers.
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! Communication Methods
Document communication method(s), such as gestures, picture board or sign language, if family member is nonverbal. Document specific behaviors and/or gestures to assist with communication and with understanding the developmentally disabled family member's needs. Identify negative behaviors and fears and possible methods to reduce incidences. Identify items that have a calming effect and where they are located. Calming effects may include blankets, stuffed animal(s), music, video, night-light, book, photograph, arts and crafts, etc. List pet names with type of pet and the name and telephone number of individuals who have agreed to care for pets and/or domestic animals.
! Behaviors and Calming Effects
! Pet names and contacts to care for pets and domestic animals
These items are on page 24:
! Photograph
Attach a current photograph of the developmentally disabled family member. Identify the developmentally disabled family member and his or her nickname, gender, date of birth and primary language, if other than English. Indicate whether there is an advanced directive (Do Not Resuscitate or DNR). If there is a DNR, post the original signed order next to the Checklist. Document the name, address and telephone number of the primary care provider. If medical care is provided by a physician group or clinic, identify the specific physician who best knows the developmentally disabled family member. Identify the name, address, telephone number and hours of operation. Document the names, addresses, telephone numbers and program names of support coordinators, case managers, therapists, counselors and others who are involved in the family member's care, therapy and coordination of services. Document the day program agency and program name, address, contact name(s) and telephone number. Document the name of the school or training program, teacher's name, telephone number, classroom number and grade. Identify the type of health insurance and location of health insurance card(s) or copies of cards.
22
! Family Member
! Advanced Directive
! Physician
! Pharmacy
! Case Managers
! Day Program/School
! Insurance
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EMERGENCY INFORMATION CHECKLIST
Clear the Form! DATE COMPLETED ________________________________ RESIDENCE address or specific directions to the home and telephone number _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ HOUSEHOLD Number of members in household _____________. List household members' names _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ EMPLOYERS
Employed Household Member's Name Employer's Name Employer's Phone Number (incl. Area Code)
____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ EMERGENCY CONTACTS
Name/Relationship
_____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________
Cell Phone Number (incl. Area Code)
____________________________ ____________________________ ____________________________ ____________________________ ____________________________
Address (No., Street, City, State ZIP)
1. ___________________________ ____________________ ___________________ ____________________________ 2. ___________________________ ____________________ ___________________ ____________________________ 3. ___________________________ ____________________ ___________________ ____________________________ 4. ___________________________ ____________________ ___________________ ____________________________ 5. ___________________________ ____________________ ___________________ ____________________________ 6. ___________________________ ____________________ ___________________ ____________________________ MEDICATIONS and BLOOD TYPE ______________________________________________________________________ Normal Blood Pressure _______________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ MEDICAL CONDITIONS (including allergies) _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ PROSTHESES, MEDICAL APPARATUSES and SUPPLIES and locations where stored when not in use _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ COMMUNICATION METHODS _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ BEHAVIORS/CALMING EFFECTS _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ PETS and/or DOMESTIC ANIMALS names, and contacts to care for pets/domestic animals. _________________________________________________________________________________________________________
Home Phone Number (incl. Area Code)
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FOLD
Place Photo Here
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NAME NICKNAME DATE OF BIRTH PRIMARY LANGUAGE GENDER
Do Not Resuscitate (DNR) Order? "Yes " No
If Yes, post an original signed order with this completed Emergency Checklist. PHYSICIAN
PHARMACY
CASE MANAGER(S)
DAY/PROGRAM/SCHOOL
HEALTH INSURANCE
VIAL OF LIFE IN REFRIGERATOR "Yes " No
Fasten this page to the back of the Emergency Information Checklist (pg. 23). Fold in half, and post on refrigerator door.
FOLD
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Emergency Information Card for Individual with a Disability
Complete both sides of card with a permanent ink pen. Cut out card and fold in half. Carry the card with with you at all times. The card may be laminated for protection and durability.
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Emergency Information Card for Caregivers
This card alerts emergency responders and others that there is an individual with a developmental disability dependent upon a caregiver. Complete both sides of card with a permanent ink pen. Cut out card and in half. Carry this card with you at all times. The card may be laminated for protection and durability.
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3839 N 3rd St., Suite 306 3839 Phoenix, AZ 85012 AZ 602-277-4986 Fr To l l Free 1-866-771-9378 TTY 602-277-4949 w w w. a z g c d d . o rg
Equal Opportunity Employer/Program. ? Under the Americans with Disabilities Act (ADA), the Department must make a reasonable accommodation to allow a person with a disability to take part in a program, service, or activity. For example, this means that if necessary, the Department must provide sign language interpreters for people who are deaf, a wheelchair accessible location, or enlarged print materials. It also means that the Department will take any other reasonable action that allows you to take part in and understand a program or activity, including making reasonable changes to an activity. If you believe that you will not be able to understand or take part in a program or activity because of your disability, please let us know of your disability needs in advance if at all possible. ? This document is available in alternative formats by contacting the Governor's Council on Developmental Disabilities at 602-277-4896.
GCD-1019AHBPPD (10-05)

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Copyright to this resource is held by the creating agency and is provided here for educational purposes only. It may not be downloaded, reproduced or distributed in any format without written permission of the creating agency. Any attempt to circumvent the access controls placed on this file is a violation of United States and international copyright laws, and is subject to criminal prosecution.

Arizona State Library, Archives and Public Records--Law and Research Library.

Full Text

Revised October 2005
? 2004, Arizona Department of Economic Security
Table of Contents
Introduction ..................................................................................................... 1
Section I -Support Systems Guardianship ............................................................................................................. 3 Special Needs Trust .................................................................................................. 3 Emergency Contact ................................................................................................... 3 Developing Support Sytems ..................................................................................... 4 Postal Carrier.............................................................................................................. 4 Utility Company ........................................................................................................ 4 Emergency Personnel Contact .................................................................................. 4 Employer ................................................................................................................... 5 Day Program or Training Program .............................................................................. 6 Educational Facility ................................................................................................... 6 Therapeutic Services ................................................................................................. 7 Air Evacuation Personnel ......................................................................................... 7 Vial of Life ................................................................................................................. 7 Medications ............................................................................................................. 8 Allergies .................................................................................................................... 8 Medical Conditions ................................................................................................. 8 Prostheses, Medical Apparatuses and Supplies .................................................... 8 Travel Kit .................................................................................................................... 9 Advanced Directives ............................................................................................... 9 Pets and Domestic Animals ..................................................................................... 9 Water and Heating ................................................................................................... 9 Residential and Out-of-Home Placement ............................................................... 1 0 Individuals Living on Their Own .............................................................................. 1 1 Section II - Daily Schedule ............................................................................. 1 2 Section III - Emergency Information Checklist and Cards.............................. Emergency Information Checklist Completion Guide ........................................... Emergency Information Checklist ............................................................................ Wallet Card for Individual with a Developmental Disability ................................... Wallet Card for Caregivers ........................................................................................ 20 21 23 25 26
Introduction
he Arizona Governor's Council on Developmental Disabilities (GCDD) sponsored the development of the Emergency Planning Guide for Persons with Developmental Disabilities to help facilitate the transition of care for the individual with developmental disabilities, if an emergency occurs for that individual or the care provider.
T
Information used in the design and publication of this guide was obtained from individuals with developmental disabilities, family members and service providers throughout Arizona who participated in ten focus groups. Participants ranged in age, and their developmentally disabled family members ranged in age and severity of disability. A draft guide was distributed to participants in the original focus groups, and to other non-participants who had expressed an interest. The Emergency Planning Guide for Persons with Developmental Disabilities is a step-by-step guide designed to aid caregivers in preparing an individualized plan to ensure the appropriate personal and daily care of their family member, in the event the caregiver is incapacitated. This guide is intended primarily for parents, siblings and other loved ones who are responsible for the care and fiduciary oversight of a family member with developmental disabilities. The term "caregiver" is used throughout the guide for ease in reading, and is not to be confused with fee-for-service caregivers who are paid to provide daily care for individuals with developmental disabilities. Planning for the care and fiduciary oversight of a loved one with developmental disabilities is the most precious gift a family can bestow on all family members. The establishment of a comprehensive emergency plan should be completed regardless of the age of the individual or severity of the developmental disability. There may be some sections of the guide that do not apply to your situation or family member. This guide was developed for all levels and severity of developmental disabilities.
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_______________________________________________________________________________ Introduction
The Emergency Planning Guide is divided into three sections:
Section I ? Support Systems assists caregivers with identifying community
supports, who would contact emergency personnel in the event of any sudden changes in routine or schedule for the caregiver or individual with developmental disabilities. Storing of medications and medical equipment in a specific location, fiduciary plans and other preparations are also covered.
Section II ? Daily Schedule is a guide to document the daily routine, habits and
activities of the individual with developmental disabilities. This will facilitate the continuation of activities and routines with the least amount of disruption, in the event someone else must suddenly assume caregiver responsibilities.
Section III ? Emergency Information Checklist and Cards gives information
on preparing the Emergency Information Checklist, the wallet-sized Emergency Information card for caregivers, and the Emergency Information card to be carried by the individual with developmental disabilities. All information should be current and any changes in information contained in the plan should be completed as needed. At a minimum, the Emergency Plan should be reviewed and updated yearly.
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Section I. Support Systems
Guardianship
The establishment of guardianship and the protection of assets will benefit not only the developmentally disabled family member but also all family members. Establishing guardianship will ensure that the primary caregiver family members are able to make decisions that significantly impact the health, safety and welfare of the developmentally disabled family member. For many families, the decision to establish guardianship is difficult. It is critical to obtain accurate information that relates exclusively to Arizona's statutory regulations and mandates. The Governor's Council on Developmental Disabilities publishes the Legal Options Manual for Families, Consumers and Caregivers When an Individual with Developmental Disabilities Reaches the Age of 18, developed for the Governor's Council on Developmental Disabilities by the Arizona Center for Disability Law. It contains accurate, detailed information on Guardianship, Conservatorship, Durable General Power of Attorney and related topics.
Special Needs Trust
Establishing a special needs trust will ensure the protection of assets and financial oversight for the developmentally disabled family member upon the death or incapacitation of the primary caregiver family member(s). A trust will protect any assets that the family member may inherit, without negatively impacting any entitlements like Supplemental Security Income (SSI). The developmentally disabled family member will also be protected from any possible legal actions from a third party that could negatively impact his or her financial stability and be contrary to the final wishes of his or her parent(s).
Emergency Contact
Emergency contact information should be accurate. Anyone listed should be informed that he or she is an emergency contact and agree to perform the tasks requested. All people listed as emergency contacts should know who else is listed and how to contact them. If respite care is a service that is available to the family, include the respite care worker on the emergency contact list. Contact those individual(s) who can be relied upon in the event of an emergency and discuss their role. Inform them of the Emergency Plan. Once they have agreed, provide instructions and/or demonstrate the tasks to be performed. Some roles and
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responsibilities can be divided among several people. Show them where items they will need are stored, such as legal documents, household members' identification, banking information, keys, passwords and security codes.
Developing Support Systems
The development of a support network of neighbors, family, friends and/or co-workers is critical. This network should be people with whom the caregiver maintains regular communication. These individuals should have one another's telephone numbers and home and work addresses, so they can be in contact in the event there has not been any communication, or they notice that something appears to be amiss. If this occurs, they will attempt to contact the caregiver and, if no response, contact the appropriate emergency responders.
Postal Carrier
Inform the postal carrier that an individual with developmental disabilities resides at the residence, and request that the carrier contact law enforcement if he or she notices the mail and/or newspapers piling up or any other changes in the household patterns. In some communities and neighborhoods the postal carrier may regularly change. If this option is not be feasible, consider posting the information inside the mailbox.
Utility Company
Utility company personnel assigned to specific service areas are very familiar with the neighborhoods. They are in neighborhoods all hours of the day and often times are able to see in backyards. Contact the utility company's customer service department to inform the company that an individual with developmental disabilities resides at the residence, and request that the company representative contact law enforcement if he or she notices the mail and/or newspapers piling up or any other changes in the household patterns.
Emergency Personnel Contact
Visit the fire station nearest to the home to meet with personnel from each shift. Inform the firefighters and emergency medical technicians (EMTs) that an individual with developmental disabilities resides at the specific address or location. Inform them of the Emergency Information Checklist and provide information to aid in their response.
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In urban areas, fire department responses do not always occur from the nearest station to the location of the emergency. If the nearby station personnel are responding to another emergency, the emergency response personnel from another station will respond. This should not discourage the family from visiting the fire station closest to their home. In rural areas many fire departments are managed by volunteers, or a combination of paid personnel and volunteers. Request an opportunity to attend one of the volunteer fire department's regular meetings, to inform them that an individual with developmental disabilities resides at the home. Provide information that may assist in their response. Accurate, written directions are necessary for residences that are difficult to locate (for example, roads are not maintained, or there is no signage and/or house numbering system). Inform the personnel of the Emergency Information Checklist posted on the refrigerator. Contact the local law enforcement department to inform the officers that an individual with developmental disabilities resides at the residence. Inform the officers of the Emergency Information Checklist and provide information that may aid in their response. Request a visit by the officers assigned to the precinct or "beat" in your neighborhood. Introduce the individual with developmental disabilities and provide additional information that may assist with the officers' response to emergency calls. Request that the officers check on the occupants, in the event that they notice anything different with the house such as the mail and/or newspapers piling up, doors left wide open, window coverings remaining open or closed. In rural areas it may be necessary to provide accurate, written directions to the residence when there is no street signage and/or house numbering system, or where the residence is in a remote or isolated area.
Employer
A caregiver should develop a plan with his or her employer in the event that he or she does not arrive as scheduled to work, and there have been no previous work schedule changes. A similar plan should be developed with the developmentally disabled family member's employer in the event that the family member does not show up for his or her scheduled shift, and the employer has not received a call regarding the absence. The employer plan should include, at a minimum, the following steps:
! Employer to call the family member's home. ! If no answer, employer to call the emergency contact. Emergency Planning Guide 5
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! If no answer at the emergency contact, employer to call law enforcement and ask
them to check on the household. If the family does not have a telephone and the emergency contact person does not live in close proximity, the family may want to consider requesting that the employer contact law enforcement only to ask that officers check on the household.
Day Program or Training Program
Inform the program supervisor and primary staff contact of the developed Emergency Plan. Request that the family member's file include an emergency plan in the event the family member has not made any schedule changes and
! Does not arrive as scheduled; or ! The agency driver (if transportation is provided) reports that no one answers the
door at the scheduled pick-up or drop-off time. This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone number(s).
! If no one answers at the alternate telephone numbers and/or emergency telephone
numbers, staff to call law enforcement, informing the duty officer about the situation and request that officers check on the household. It is critical that all information in the family member's records is current and accurate. Detailed directions to the home must be included if the residence is located in an area with no street signage and/or no house numbers, or in a remote area.
Educational Facility
School personnel, including preschools, should be informed of the establishment of the Emergency Plan and the school's role in the implementation. Medical care release forms should be updated and include the individuals listed as emergency contacts. This will avoid any delays in the event medical care is required and the caregiver is incapacitated. The family member's school records should include an emergency plan in the event the family member has not made any schedule changes and:
! Does not arrive as scheduled; or ! The van/bus driver (if the school or school district provides transportation) reports
that no one answers the door at the scheduled pick-up time or drop-off time.
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This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone number(s).
Therapeutic Services
Caregivers should document a plan with any therapeutic service provider (e.g., speech therapist, occupational therapist, physical therapist, psychiatric services) who is regularly scheduled to provide services in the event the developmentally disabled family member or the caregiver does not arrive for the scheduled appointment or does not answer the door, if it is an in-home service. This plan may include the following steps:
! Staff to call the family member's home. ! If no one answers at the home, staff to call alternate telephone numbers and/or
emergency telephone numbers.
Air Evacuation Personnel
Families residing in rural areas depend upon air evacuation for medical emergency transportation. Meet with personnel from each shift, including any "on-call" personnel, to provide information that will assist with their response. Contact the Air Evacuation business office to inquire about the availability of pre-flight planning for medical emergency transportation. Relevant information about the individual with developmental disabilities should be provided and made readily available in the event of any air evacuations.
Vial of Life
The Vial of Life provides medical information to emergency personnel and is an abbreviated back-up to the Emergency Information Checklist. List the names of all household members. Identify the individual with developmental disabilities, medication schedule with any special administration instructions, medical problems, physician contact, location(s) where medications are stored, case manager and emergency contact information. Date the information (it is important that emergency personnel know they're getting the most current information), and insert into an empty pill container. The Vial of Life information should be reviewed periodically, and updated whenever there are any changes. Document the date revisions were made.
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The Vial of Life is secured with tape to the underside of the top shelf of the refrigerator. Emergency personnel are trained to look for a Vial of Life in this universal location. Another vial should be stored in the glove compartment of the caregiver's vehicle(s).
Medications
A specific location to store all prescribed medications and those over-the-counter medications that are administered on a daily basis (i.e., vitamins) should be identified. Each family member's medications should be placed in a separate container, in a specific area and labeled with the individual's name. Medications requiring refrigeration should be placed in a labeled container or specific shelf within the refrigerator. Information on the purpose of the medication should also be included (i.e., seizures, high blood pressure, etc.). A copy of the family member's health insurance card, and a listing of the medication schedule with any special administration instructions should be stored with the medications, and included in the Vial of Life (see Vial of Life section above). All discontinued medications should be immediately discarded or removed from the identified designated location for medications, and deleted from the Emergency Information Checklist and Vial of Life information.
Allergies
List all known allergies, allergic reactions and required medical interventions, if applicable.
Medical Conditions
Identify all medical conditions including visual, auditory, dietary restrictions, communicable diseases, seizure disorders, asthma, high blood pressure, heart conditions, diabetes and use of feeding tube, respirator, oxygen, etc.
Prostheses, Medical Apparatuses and Supplies
Identify locations to store any prosthesis, medical apparatuses and supplies when not in use. Develop a list of the items, such as eyeglasses, hearing aids, false teeth, wheelchair, walker, crutches, feeding tube, communication board and diapers/disposable underwear. Store the list in the container with the medications. Document the name, telephone number and address of the medical equipment suppliers. Consider the use of medical alert systems. With these systems, the individual wears or carries an identifier (e.g., bracelet) to inform emergency responders that he or she has
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a specific health or medical condition, and often there is a toll-free number to contact for additional information.
Travel Kit
If medical related supplies and items are needed, organize a "travel kit." The travel kit will contain a two (2) day supply of the necessary items, such as feeding tube, lubricant, disposable underwear/diapers, wipes, antiseptic swabs, latex gloves, aspirator, etc. Identify a specific location to store the travel kit and include a list of the contents. Also include the physician's name and contact information.
Advanced Directives
Post the original, signed Advanced Directive or Do Not Resuscitate Order with the Emergency Information Checklist. Update the Order every two years, at a minimum. The Governor's Council on Developmental Disabilities publishes the Legal Options Manual for Families, Consumers and Caregivers When an Individual with Developmental Disabilities Reaches the Age of 18. This manual provides detailed information on Advanced Directives and the Durable Health Care Power of Attorney, with forms and instructions for completing them.
Pets and Domestic Animals
The care of pets and domestic animals should be arranged in the event of an emergency. Identify others who agree to temporarily care for family pets and domestic animals. Pet foster care is available in some areas, primarily urban. Contact these organizations as an option for the care of household pets. The location of supplies and storage of animal food/feed and care routines should be reviewed with whomever has agreed to provide the care. If an account is established for feed, apprise the feed store of the Emergency Plan and arrange the charging of feed expenses in the event the animals must be in the temporary care of someone else.
Water and Heating
In some areas, particularly rural and unincorporated areas, there is no established water service. If there is no water service for the residence, information should be documented and posted with the Emergency Information Checklist on how water is supplied to the residence. If water is delivered, include the contact name and telephone number of the water delivery service, water delivery schedule and method of payment.
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If the only means of heating and/or cooking is wood fuel and/or propane, any delivery schedules and method of payment should be documented and posted with the Emergency Information Checklist. Individuals on the emergency contact list should be informed of any water delivery, propane and/or wood fuel needs.
Residential and Out-of-Home Placement
The Arizona Department of Health Services and the Arizona Department of Economic Security require residential programs to develop and implement emergency procedures. While these procedures are comprehensive, they do not address emergencies that occur at the developmentally disabled family members' residence. Family members should ensure that residential program staff has:
! Current contact information including employers, cellular and facsimile telephone
numbers and e-mail addresses
! Current emergency contacts and the order in which to contact ! Family members' work schedules ! Schedule of work-related business trips and how to contact when out of town ! Vacation schedule and contact information ! Any Advanced Directive or Do Not Resuscitate (DNR) orders, if applicable.
Emergency plans need to be in place for those times when the developmentally disabled family member is home for visits and holidays. The same information should be developed as for those who reside at home. The Emergency Information Checklist should be posted on the refrigerator and the wallet-sized Emergency Information card carried at all times. Families with regularly established visitation and telephone contact patterns should inform the residential program staff of the Emergency Plan and include the residential program staff as part of the support network. The plan should include instructions for staff:
! To contact the family if they have missed a scheduled visit or meeting or there is a
lapse in communication without previous contact by the family to inform staff of any changes
! If no one answers at the home or work, to call alternate telephone numbers and/or
emergency telephone number(s), and
! If no answers at the alternate telephone numbers and/or emergency telephone
numbers, to call law enforcement, informing officers of the situation and requesting that they check on the household.
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Individuals Living on Their Own
The establishment of an Emergency Plan for developmentally disabled individuals living on their own is critical for their well-being. Inform the fire station nearest to the home and the local law enforcement agency that an individual with developmental disabilities resides alone in the home, and provide information that will assist officers in responding to an emergency. Specific directions to the residence must be provided if the family member is residing in a location where there is no signage and/or house numbering system. A color-coded speed dialing system can expedite emergency responders. All household telephones should have the same color-coded system. If the individual has a cellular telephone, the cellular telephone should be programmed to expedite an emergency response. In some areas, especially rural areas, cellular telephone transmission may be intermittent or of poor quality. It should also be remembered that the technology for cellular telephones might not be available to determine the location of the emergency, without verbally informing the emergency response system of the location of the emergency. The Emergency Information Checklist described in this guide should be completed and posted on the refrigerator (see page 20). Medications, medical apparatuses, supplies and prostheses should be stored in a specific location and documented on the Emergency Information Checklist. Family members' vacation and business trip itineraries should be posted on the refrigerator. The apartment manager should have a list of emergency contacts and the order in which they should be called. These include work numbers, pagers, cellular telephone numbers and place of employment for all family members. Family members should inform the apartment manager of any vacation and business trip itineraries. Employers and day programs should be included in the Emergency Plan (see pages 5 and 6).
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Section II. Daily Schedule
A
change in routine can have serious consequences for a developmentally disabled individual. In the event of an emergency, it is important to try to maintain as much of a routine as possible.
This section is a guide to use in documenting and/or audio recording the family member's daily activities. If weekend activities and routines are different, document or record the weekend routine. For individuals who live on their own or who do not have a set daily routine, document that they do not have a set routine, and the activities that they perform during a regular day. When completed, the documentation and/or audio recording should be stored in the container with the medications. If stored in another location, document on the Emergency Information Checklist where the information is located. Distribute copies to the people listed as emergency contacts, and have a copy filed in the case manager's records.
Morning Activities
Wake-up time ? Does family member wake-up on his or her own? What time does he or she wake up?
Breakfast ? What does family member prefer to eat and drink? Where does he or she sit? Any assistance needed? Foods to avoid?
Television on or off?
Radio or music on or off?
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Housekeeping - Does family member set table? Remove dirty dishes from table? Wash dishes/load dishwasher?
Does the family member make his or her own bed?
Assists with other housekeeping or yard work? Does family member have chores or assigned tasks (i.e., helps with laundry, empties trash, recycles)? Is there a reward system?
Hygiene - Does family member need assistance with personal care and dressing? Does family member shower/bathe in the morning or evening?
How often does the family member get a haircut and where?
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Daytime Activities
Does the family member prepare his or her own lunch to take to school, work or day program? If prepares own lunch, is it prepared in the morning or the previous night? If takes own lunch, what does he or she like to eat and drink?
School or training program - Does family member attend school or training program? Schedule? Transportation provided by whom? Pick-up/drop-off times? Lunch provided? Name of school, address, classroom number and teachers' names.
Day program - Does the family member participate in a day program? Participation schedule? Transportation provided by whom? Pick-up time/drop-off times? Lunch provided? Name of program, address, staff names.
Employment - Is the family member employed? Place of employment, supervisor's name, work schedule, pay day? Wear uniform and/or name tag? Transportation provided by whom? Pick-up/drop-off times? Takes lunch or buys lunch?
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If no planned activities or program, what time does he or she eat lunch? Food and beverage preference?
Appointments/Services
Document all regularly scheduled appointments (i.e., speech therapy, occupational therapy, attendant care and/or housekeeping) with the times, days of the week, location, staff names and duration of the appointment/service.
Recreation/Socialization
Participates in planned activities? Schedule? Costs? Transportation provided by whom? Pick-up/drop-off times? Types of activities he or she enjoys and any limitations?
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What television shows and videos does the famiy member enjoy? Plays video games? Board games? Plays cards and if so what games? Enjoys arts and crafts? To what degree does the individual know how to self-manage money?
Are there any concerns or areas needing extra supervision, such as use of telephone? Use of computer and chat rooms? Wandering?
Evening Schedule
Dinner time - Is evening meal at a specified time? Meal and beverage preferences? Does family member assist with meal preparation? Does family say grace before meal?
After dinner activities ? Watches television? Completes puzzles, draws or colors? Listens to music, plays an instrument? Performs chores? Takes a walk or rides bicycle?
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Bedtime activities ? Bathing and personal care? Plans clothes for following day? Does the family member say evening prayers?
Bed time ? Use of nightlight, door open or closed, music? Does he or she sleep through the night? Have nightmares? Wet or soil the bed? Wander the house at night? Leave the house? Sleepwalk?
Weekend Activities and Schedule
Does family member attend religious services? If so, what is the name and location of congregation? What time to attend? Where does he or she prefer to sit?
Holiday Routines and Special Days
Does family celebrate favorite holiday(s) and/or special days such as birthday, Super Bowl, Halloween, Valentine's Day?
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Assists with preparations? Where and with whom does the family celebrate the specific special events?
Special foods?
Does the family member attend religious holiday services? If so, what is the name and location of congregation? When is service? Where does he or she prefer to sit?
Activities that always occur on holidays or special days, such as family football game, baking/cooking, dyeing Easter eggs, lighting the Sabbath candles, etc.?
Behaviors/Speech Patterns
If the developmentally disabled family member is nonverbal, identify behaviors that will assist someone with understanding and communicating with the individual. Document if the individual uses a communication aid device.
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Notes
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Section III. Emergency Information Checklist and Cards
Emergency Information Checklist
To avoid delays in obtaining emergency services, the Emergency Information Checklist should be updated whenever any changes occur. You may make photocopies of the Emergency Information Checklist for updating, or download from the Governor's Council on Developmental Disabilities (GCDD) website listed below. To complete the Emergency Information Checklist, fill in the on-screen fields (requires Acrobat Reader 5.0 or later) and print the pages, or print the page and fill in the information with a permanent ink pen. Use the step-by-step Emergency Information Completion Guide on pages 21 and 22. Take your time when completing the Emergency Information Checklist and write legibly. Others have to read it. When completed, the Emergency Information Checklist should be posted on the refrigerator in the family member's residence. A copy may also be kept in the caregiver's car, and in the individual's case management records. The Checklist may be laminated for durability.
Emergency Information Cards
There are two (2) types of wallet-sized Emergency Information cards. The card on page 25 provides information about the developmentally disabled individual and emergency contact information. This card is to be carried with any other type of identifying information card. Some programs distribute identification cards for developmentally disabled individuals. Often, these cards include a photograph of the individual and the name of the program that provides services. The wallet-sized card should also be distributed to persons listed as emergency contacts. In the event of an emergency, they will have critical information readily available. The other Emergency Information card on page 26 is designed for caregiver use. It alerts emergency responders and others that there is an individual with developmental disabilities in need of a caregiver, if the primary caregiver is incapacitated. To complete the Emergency Information cards, fill in the on-screen fields and print the page (requires Acrobat Reader 5.0 or later). You can also print the cards and fill in the information later with a permanent ink pen. Additional Emergency Information Checklists and wallet size Emergency Information cards can be obtained at the GCDD website, www.azgcdd.org. You may also call the Council at 602-277-4986 (in the Phoenix metro area), toll-free 1-866-771-9378, or TTY 602-277-4949.
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Emergency Information Checklist Completion Guide
The completed Emergency Information Checklist should be posted on the refrigerator door for emergency personnel, and a copy may be stored in a caregiver's vehicle and filed in the individual's case management records.
! Date Completed
Document the date the Emergency Information Checklist was completed. A current Checklist will reduce delays, and the emergency responders will be assured the information is accurate. Document the address and/or specific directions to the place of residence and residence telephone number.
! Residence
! Household Members
Document the number of people living in the household and list the names of all household members.
! Employer(s)
Document the names of employed household members, employers' names and telephone numbers.
! Emergency Contacts
List names, relationships, telephone numbers and addresses of emergency contacts. List them in the order to be contacted. If applicable, include any respite care, attendant care and housekeeping providers.
! Medications and Blood Type
Identify the locations where medications are stored, and the blood types of household members.
! Medical Conditions (including allergies)
Document all medical conditions, such as disability information (diagnosis and/or explanation), communicable diseases, seizure disorders, diabetes, asthma, high blood pressure, heart conditions, and use of feeding tube, oxygen, respirator, etc. Identify conditions or events that may precipitate a seizure or respiratory problems. List all allergies, allergic reactions and required medical interventions.
! Prostheses, medical apparatuses and supplies
Identify the use of prostheses and/or needed medical apparatuses and the locations where stored. This may include eyeglasses, hearing aids, false teeth, wheelchair, w a l k e r , respirator, feeding tube, communication board, diapers/disposable underwear, etc. Identify the location of a "travel kit" containing necessary supplies (see page 9). Document the name, telephone number and address of medical equipment suppliers.
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__________________________________________ Section III - Emergency Information Checklist and Cards
! Communication Methods
Document communication method(s), such as gestures, picture board or sign language, if family member is nonverbal. Document specific behaviors and/or gestures to assist with communication and with understanding the developmentally disabled family member's needs. Identify negative behaviors and fears and possible methods to reduce incidences. Identify items that have a calming effect and where they are located. Calming effects may include blankets, stuffed animal(s), music, video, night-light, book, photograph, arts and crafts, etc. List pet names with type of pet and the name and telephone number of individuals who have agreed to care for pets and/or domestic animals.
! Behaviors and Calming Effects
! Pet names and contacts to care for pets and domestic animals
These items are on page 24:
! Photograph
Attach a current photograph of the developmentally disabled family member. Identify the developmentally disabled family member and his or her nickname, gender, date of birth and primary language, if other than English. Indicate whether there is an advanced directive (Do Not Resuscitate or DNR). If there is a DNR, post the original signed order next to the Checklist. Document the name, address and telephone number of the primary care provider. If medical care is provided by a physician group or clinic, identify the specific physician who best knows the developmentally disabled family member. Identify the name, address, telephone number and hours of operation. Document the names, addresses, telephone numbers and program names of support coordinators, case managers, therapists, counselors and others who are involved in the family member's care, therapy and coordination of services. Document the day program agency and program name, address, contact name(s) and telephone number. Document the name of the school or training program, teacher's name, telephone number, classroom number and grade. Identify the type of health insurance and location of health insurance card(s) or copies of cards.
22
! Family Member
! Advanced Directive
! Physician
! Pharmacy
! Case Managers
! Day Program/School
! Insurance
Emergency Planning Guide
__________________________________________ Section III - Emergency Information Checklist and Cards
EMERGENCY INFORMATION CHECKLIST
Clear the Form! DATE COMPLETED ________________________________ RESIDENCE address or specific directions to the home and telephone number _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ HOUSEHOLD Number of members in household _____________. List household members' names _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ EMPLOYERS
Employed Household Member's Name Employer's Name Employer's Phone Number (incl. Area Code)
____________________________________ ____________________________________ ____________________________________ ____________________________________ ____________________________________ EMERGENCY CONTACTS
Name/Relationship
_____________________________________ _____________________________________ _____________________________________ _____________________________________ _____________________________________
Cell Phone Number (incl. Area Code)
____________________________ ____________________________ ____________________________ ____________________________ ____________________________
Address (No., Street, City, State ZIP)
1. ___________________________ ____________________ ___________________ ____________________________ 2. ___________________________ ____________________ ___________________ ____________________________ 3. ___________________________ ____________________ ___________________ ____________________________ 4. ___________________________ ____________________ ___________________ ____________________________ 5. ___________________________ ____________________ ___________________ ____________________________ 6. ___________________________ ____________________ ___________________ ____________________________ MEDICATIONS and BLOOD TYPE ______________________________________________________________________ Normal Blood Pressure _______________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ MEDICAL CONDITIONS (including allergies) _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ PROSTHESES, MEDICAL APPARATUSES and SUPPLIES and locations where stored when not in use _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ COMMUNICATION METHODS _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ BEHAVIORS/CALMING EFFECTS _________________________________________________________________________________________________________ _________________________________________________________________________________________________________ PETS and/or DOMESTIC ANIMALS names, and contacts to care for pets/domestic animals. _________________________________________________________________________________________________________
Home Phone Number (incl. Area Code)
Emergency Planning Guide
23
FOLD
Place Photo Here
Clear the Form!
NAME NICKNAME DATE OF BIRTH PRIMARY LANGUAGE GENDER
Do Not Resuscitate (DNR) Order? "Yes " No
If Yes, post an original signed order with this completed Emergency Checklist. PHYSICIAN
PHARMACY
CASE MANAGER(S)
DAY/PROGRAM/SCHOOL
HEALTH INSURANCE
VIAL OF LIFE IN REFRIGERATOR "Yes " No
Fasten this page to the back of the Emergency Information Checklist (pg. 23). Fold in half, and post on refrigerator door.
FOLD
__________________________________________ Section III - Emergency Information Checklist and Cards
Emergency Information Card for Individual with a Disability
Complete both sides of card with a permanent ink pen. Cut out card and fold in half. Carry the card with with you at all times. The card may be laminated for protection and durability.
Clear the Form!
Emergency Planning Guide
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__________________________________________ Section III - Emergency Information Checklist and Cards
Emergency Information Card for Caregivers
This card alerts emergency responders and others that there is an individual with a developmental disability dependent upon a caregiver. Complete both sides of card with a permanent ink pen. Cut out card and in half. Carry this card with you at all times. The card may be laminated for protection and durability.
Clear the Form!
Emergency Planning Guide
26
3839 N 3rd St., Suite 306 3839 Phoenix, AZ 85012 AZ 602-277-4986 Fr To l l Free 1-866-771-9378 TTY 602-277-4949 w w w. a z g c d d . o rg
Equal Opportunity Employer/Program. ? Under the Americans with Disabilities Act (ADA), the Department must make a reasonable accommodation to allow a person with a disability to take part in a program, service, or activity. For example, this means that if necessary, the Department must provide sign language interpreters for people who are deaf, a wheelchair accessible location, or enlarged print materials. It also means that the Department will take any other reasonable action that allows you to take part in and understand a program or activity, including making reasonable changes to an activity. If you believe that you will not be able to understand or take part in a program or activity because of your disability, please let us know of your disability needs in advance if at all possible. ? This document is available in alternative formats by contacting the Governor's Council on Developmental Disabilities at 602-277-4896.
GCD-1019AHBPPD (10-05)